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about

This is an organization based in Casselberry, Florida that is dedicated to raising money for research for a very rare disease named Fibrodysplasia Ossificans Progressiva (FOP). It is an inherited disorder associated with muscle paralysis due to this muscle tissue turning into bone. Any type of lesion or stress to any part of the body turns that specific site into bone. It is so rare that doctors usually see these chunks of bone in the body and misdiagnose it as cancer. Subsequent surgery to remove these masses leads to massive outgrowth of bone that leaves the patient completely paralyzed in that section of the body. It basically is a catastrophic metamorphosis of the body turning itself into bone.